I value the insight of this group and would be interested to know what the opinions of the group might be. I have been on 13 mgs of pred for the past two weeks and getting physical therapy on my neck twice a week. All is well at PT but when I come home my sides are aching and inflamed. Decided to up the pred to 15 on Saturday afternoon and by evening felt so good, as well as Sunday and Monday with no pain. That was until I went to PT this afternoon. My sides are burning and two doses of Arthritis Strength Acetaminophen are not helping. I currently sit with hot packs on. Is the PT making the PMR worse. The Dr. was possibly going to call in additional PT work on stretching my rib cage to help but will that really do the job or cause more problems? I am fortunate that I do not suffer from fatigue that plagues so many but I had really enjoyed my pain free weekend. Thanks

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Before diagnosis I was having physio twice a week and in so much pain afterwards. I stopped everything and with the Steroids life was bearable again. Now a year after diagnosis I have just started having some very gentle physio on my lower back which seems to be helping a specific pain on the right which I don't think is connected to PMR but of course anything can set the other muscles off!

For me doing, any physical exercise was hard going and made things worse so I limited myself to 20 min walk with dogs everyday and even then in early days ( 2 years ago) I had to stop and rest during the walk ( once I called my husband who came and collected me in the car!) I am aware some people were/are not lucky enough to do even that. Now the walk is no problem So guess you have to listen to your body. It will get better take heart.

bunnymom, it depends largely on what you mean by "physical therapy" and whereabouts you are on the PMR/steroid 'journey'. Whereas. the usual manual techniques of physiotherapy are contra-indicated in patients with PMR and on long-term steroids, it is thought that a gentle stretching and exercise programme can help with the secondary effects of limited function.

In my early, undiagnosed days, my pain was thought to be due to the slippage of my spine (spondylolisthesis) and I had a few sessions of physiotherapy with the therapy concentrated on my legs via manual traction. My condition worsened to the point that I was bedbound and travelling to hospital by ambulance and wheelchair.

Following eventual diagnosis and steroid treatment, five years further down the line and whilst still on a very low steroid dose, I had physiotherapy to work on my arm and shoulder blade muscles due to knots having formed in the shoulder blade area. This time the physiotherapy just involved gentle massage, ultrasound and heat treatment which proved very successful in sorting out the pain at that time.

So, to sum up, best to avoid any manual physio techniques if my experience is anything to go by. I do hope that helps.

It really depends on PT and their knowledge about PMR. If they have treated PMR patients before, then they would know what kind of treatment is beneficial. In nutshell, gentle massage and stretching is fine, but any deep massage will release the same byproduct that causes muscle pain as PMR inflammation does. This is the reason you feel pain after the massage and increased dose of pred helps.

Yes that is exactly it in a nut shell. Thank you to all of you. The stretching I do at home after heat on my neck is helpful but the head manipulation is killing me afterwards. I explained that I had PMR but I don't think they really got it.

I'd suggest that it is the PT that is causing the trouble - much along the lines of what the others have said.

Any sustained or repeated actions - which are common in ordinary PT - will aggravate the problem in PMR. Your muscles are intolerant of acute exercise - despite the pred - so that sort of action will bring back the pain and stiffness, the same as an excess of any activity will. I had physiotherapy when I had severe back problems 4 years ago. The physio claimed to be familiar with/experienced in working with PMR patients - but she still suggested exercises to strengthen back and arms that left me almost unable to move the next day even though I had restricted the number and had stopped before I felt fatigued.

On the other hand, she identified the trigger spots associated with myofascial pain syndrome and worked on them with manual techniques - except she made the common mistake of deciding they were getting smaller and would disappear on their own. That is something that has never happened for me - they have to be gone entirely to stand any chance of more than a couple of months of freedom from problems. They returned a couple of months later! The second attempt to deal with them did work though.

Acetaminophen will do next to nothing - I haven't met anyone yet for whom it sorts PMR pain. Other things possibly but I doubt it is much more than placebo - something that recent Australian studies that have been published agree on!

It may be worth carrying on if your physiotherapist will work on identifying and dispersing such trigger points - if you have neck problems, there is probably a pair on either side of your spine in your shoulders, they can be felt as a hard knot of inflamed muscle fibres and they are the same inflammatory substances as cause PMR except they are localised and in PMR they are systemic (all through the body). Otherwise I'd drop it for now. Beware - there are physios who will SAY they know all about PMR - but then ask (repeatedly sometimes) why you are on pred - which indicates a fundamental lack of knowledge!

Many of us have benefited from something called Bowen therapy, others haven't, so it is definitely a "try it and see" option. If it will help you will feel a difference in 3 sessions at the latest, often after the first. It is a very gentle physical therapy and while you may feel worse before you feel better it won't be in the same way the PT is making you feel rubbish. It was part and parcel of keeping me upright and mobile for the 5 years I had PMR and no pred. Didn't do a lot about the PMR but it dealt with some of the add-ons and did relax me - like a spa day.

Depends what the pain is. If it is due to the PT, stop doing the PT! If it is PMR then, since you are still on a reasonable dose, you need to learn to pace yourself and manage expectations that are making you overdo things.

Pred calms the inflammation, particularly in the muscles, but any bursitis and tendonitis which might be present take a lot longer to fade. Your muscles remain intolerant of acute exercise - so overdoing it will make them hurt as if you had tried running along distance race without training and then they will take far longer to recover. That aspect is up to you - you have to help the pred. It has no effect on the underlying cause of the symptoms we call PMR - an autoimmune disorder that makes your immune system attack the tissues which leads to damage and inflammation/pain. You have to pace and rest appropriately - which helps the fatigue of course - and avoid or reduce the activities that cause you pain. Very few people find ordinary painkillers help PMR pain, and the very few who have said they use pain relief that works have been on heavy-duty narcotics - which IMHO have NO place in management of PMR.

What dose did you start on and for how long? Did you stay there until the pain was stable? How fast are you reducing? These are all things that have a bearing on pain in PMR.

Thanks for the link to Bowen practitioners in the US. Turns out there is one about a mile away from me! My regular massage which used to work wonders for my "regular' neck and lower back pain became out of the question after PMR arrived --- I would suffer for about 48 hours after a session. I'm going to give Bowen a try.

Hope they are good! Yes, massage can release any cytokines that are in the myofascial pain syndrome trigger points or in the fascia of the muscle and so that then replicates the PMR problem. You can feel strange or even PMR-ish after Bowen but it is usually different - and do remember to explain to the therapist about the PMR. If it hasn't helped at least a bit after 3 sessions it probably may not be worth carrying on but if you were used to massages then Bowen could be a good replacement - I feel really relaxed after a session and some people say they get a real energy boost. I wish I could afford it more often!

I see that there is no Bowen practitioner near me I started on 30 mgs have gotten to 11 and am now on 15. From all the reading I have done here I know my instructions were to reduce too quickly. I would like to hold the 15 for a month before I try a reduction again but my rib pain is trying me. I was at 13 on Saturday and increased 2 and found great relief. Do I go up again.? I am stopping the PT so I am hoping that will settle things down. Thank you.

If you still have active PMR symptoms then new physio should be out of the question. I started new physio about five months into my journey (had been carrying on with old exercises throughout). My physiotherapist is extremely gentle, although she's treating non-pmr issues with my spine (to prevent further curvature - scoliosis and kyphosis, both very mild so far). She has done some gentle stretching of my neck, very gentle and after preparation, and I've had (to my surprise I should say) no problems. Before undergoing any more treatment you must have a good conversation with your therapist and if he/she still doesn't understand, than I would discontinue for the time being. Ask your doctor, if he insists you need therapy, to recommend one with the right knowledge. 😉

Thank you. I think for now I am going to speak with her and probably discontinue for now. My body feels very unhappy with all this. My Dr. wiill be ok about it all. You are all so kind to take the time to reply. I appreciate it and knew I would find some help!

Along with everything else...GMA , PMR and recurrent bouts of Shingles, I have acute spinal stenosis. A pain management doctor recommended I walk in water to relieve some of the pain. The water is 88 degrees and it feels wonderful when I am in it but yesterday I thought that it had affected the PMR pain after. The therapist has me doing stretching exercises also. Has anyone else had any experience with water therapy?

Are you in the water while you stretch? Are there multiple repetitions? I don't think there should be a problem if you do a couple or so slow, gentle stretches, not to the point of pain, but if more is being expected of you, and perhaps you are cooling off because out of the water, I don't know that is such a good idea. I just returned from my physio appointment and for the first time I had to ask the therapist to stop her (always very gentle) manipulations because it was causing a really unpleasant achy sensation. She stopped at once and got me to do some slow sort of yoga (child's pose) movements instead, which was much better. I had gone into the session with a "bad back" probably because I've been alternating weeding in the garden and walking with too long sessions with my laptop!

For 5 years I did aqua aerobics to manage PMR without pred - not out of choice, because I wasn't diagnosed. I struggled into my swimsuit and joggers and crawled into the car to get to the gym every morning Mon-Friday. After showering there, afterwards I could move! After the class I sometimes did a Pilates or Iyengha yoga class - couldn't have done it without.

Here, after a severe flare 4 years ago I was able to have a few sessions of hydrotherapy which was fantastic - given I could barely walk at the time! Limited option though and nothing available outside the hospital.

A man on this forum got hydrotherapy through the fire brigade and it obviously helped a lot - he was back to running 5km in a year!

If you are feeling it afterwards why not ask to do a bit less next time and see if it helps? I found I was able to build up the quantity/force over time - but i always stopped each session at what I knew had been my limit plus a couple.

Thank you for the input...I will keep at it. I know it helps with the arthritic pain but just was not sure of the PMR. One of the problems of having multiple illnesses is trying to figure out which is which. PMR , shingles nerve pain and arthritis all sort of blend together. I did not want to be helping one at the expense of the other.